This journal records the story of “Harvey” as he goes through an umbilical cord blood mini-allo stem cell transplant that he hopes will get the CLL monkey off his back once and forever.
If you are a new reader to this journal, you may want to read earlier installments of this story by visiting our website www.clltopics.net. We have been using the story of this strictly hypothetical patient as an educational experience for our members. I am told there is an uncanny resemblance between Harvey and my husband PC but you understand I cannot possibly confirm or deny that!
A quick synopsis: Harvey was diagnosed with an aggressive form of chronic lymphocytic leukemia (CLL) almost seven years ago, in the summer of 2001. CLL is considered an indolent cancer and for some lucky patients it may not need treatment for many years. For others, like Harvey, it can prove aggressive and stubbornly resistant to therapy. It became clear pretty early in the game that Harvey was not going to be able to run the clock out on this disease. He was too young at diagnosis, a mere callow lad of 52, to employ the conventional approach as a long term strategy. He was too young to go down the slippery path of ever more aggressive chemotherapy regimens with increasingly poor quality remissions. Chances were slim that with his Bucket C prognostics Harvey would realize his ambition of dying of respectable old age someday just by using the chemotherapy cocktails available to us right now. This is the reason why CLL is still considered an incurable cancer. If he had less aggressive disease or if he had been significantly longer in the tooth, it might have been a good game plan to just ride out the disease and hope to kick the bucket before the cancer got him first. But our hero needed to develop Battle Plans for the long haul.
Frankly, the only demonstrable cure for CLL right now is an allogeneic stem cell transplant – getting rid of the patient’s cancerous immune system and replacing it with a brand-new and healthy immune system from a suitable and healthy donor. If you are a computer geek, think of this as getting rid of buggy software that is not doing the job right and rebooting your computer with brand new software without glitches. Autologous stem cell transplants (where the stem cells come from the patient himself) are not thought to be curative. Sooner or later, most patients who undergo this procedure relapse and they are back to square one with the CLL. Intuitively, it kind of makes sense. It is hard to get rid of the cancer without throwing out the rest of the corrupted immune system that allowed the cancer to flourish in the first place. But nevertheless in some situations autologous stem cell transplants may be the right choice in prolonging life. It all depends on the specifics of the case.
Allogeneic stem cell transplants replace the corrupted immune system of the patient with a brand new and healthy one from a donor. That brings up the important question of finding a suitable donor. It is not a trivial exercise to find a willing and able donor that is also a good match to the patient. Sibling donors are the first choice. If you have CLL and you may be in the market for a stem cell transplant sometime in the near future, remember to be very nice to your brothers and sisters. One of them may have an immune system perfectly matched to yours and that may make all the difference to you. You can read all about matching by reading the article on our website titled Matching Made Simple.
Sometimes, even loving brothers and sisters may not match the patient, not enough for a safe transplant. The next best option is to look for a Matched Unrelated Donor (MUD). It is wonderful to know that there are good and kind people out there, good Samaritans that will go the extra mile out of their way to help a total stranger combat his CLL or other life-threatening disease. The larger the pool of potential registered donors, the better the chances that a given patient will find a good match. But if the patient has exotic ethnicity and his particular “tribe” is not well represented in the donor pool, chances are poor that a suitable MUD match will be there for him.
Many patients make the crucial mistake of not initiating a MUD search soon enough and underestimate the difficulties involved in this process. Harvey did not make that mistake. Since he had no suitable sibling match, pretty early in his career as a cancer patient he initiated a world-wide search through all the donor banks for a potential MUD. Unfortunately, there was no MUD option available to Harvey. Not even close. Talk about your one-of-a-kind guy, they must have broken the mold after he was born. Bummer!
That left our hypothetical hero only one option as a potential source of blood stem cells: umbilical cord blood. Using stem cells from cord blood for transplanting pediatric cancer patients have been done for more than a decade now. But kids are much smaller than adults and the relatively small number of hematopoietic (blood) stem cells available in cord blood is enough to transplant kids safely. Back in 2004 when Harvey and his equally hypothetical wife “Serena” first started looking at cord blood stem cell transplants for adult patients, the technology was in its infancy. The statistics were truly scary, not too many patients survived after going through cord blood stem cell transplant in those early years. Back then, it was definitely a case of the cure being worse than the disease.
The message was clear: Harvey was going to have to play a very careful waiting game. He would be waiting for the cord blood transplant technology to come up the learning curve. And while he waited, it was important that he kept himself in good shape, because patients who were generally in good shape (other than having CLL!) had far better chances of surviving the transplant process. It was also important not to wait too long, to the point where his CLL became refractory. Refractory CLL leaves patients with few choices to bring their tumor burden down sufficiently before the transplant. It is important to have as few cancer cells in your body as possible before the transplant. As you can understand, it is important to give the new immune system coming in a chance to get settled down, before it has to face hordes of cancer cells on a rampage. Waiting too long may take away therapy options for getting the bad guys under control prior to the transplant. On the other hand, using up heavy-duty chemotherapy bullets too early in the game is not good strategy either. And many of these drugs are not exactly easy on the old body. Some of them can be downright toxic to important organs like the heart, liver, kidneys, lungs, etc.
After seven years of managing the delicate balancing act of not being too aggressive and at the same time not being too timid in controlling his CLL, Harvey and his wife Serena have decided that the time has come to start his cord blood stem cell transplant. For the past year or so, Harvey has worked with chemo-immunotherapy combinations to get the best possible remission he can get prior to the transplant. Frankly, it has been a bit of a close call, and trying to get the coveted “CR” (complete response) ahead of the transplant was no walk in the park. But his remission now appears as good as it is going to get in his case and there is no time left to dither. It is time for Harvey to get in touch with his “inner child”, become a healthy person once again thanks to the gift of umbilical cord blood stem cells from some wonderful baby whose parents chose to donate the cord blood after the birth of their child.
Cord blood transplants have some unique features, some advantages and some disadvantages, compared to transplants done using adult stem cells (sibling or MUD). However, there are many issues that are common to all blood stem cell transplants. All transplant protocols must grapple with maximizing graft-versus-leukemia (GVL), minimizing graft-versus-host-disease (GVHD), minimizing treatment related mortality (TRM, or what I like to think of as “death by therapy”) and last but not least, avoiding a relapse of the original cancer after all is said and done. The lessons learned in adult sibling and MUD transplants have helped cord blood transplants come up the learning curve and the other way around as well.
Dear reader, I promise to report the facts faithfully, neither sugar-coating the issues nor looking to sensationalize possible downturns in Harvey’s journey down this road. If things turn south, I will not leave you hanging with no clue of what happened. If, as I fervently hope, Harvey comes through this process with a clean new immune system and no trace of CLL, I promise you will be the first to know, and we will celebrate together. Every patient who wins this battle has won a victory for all of us.
On your part, you must realize that these journal entries may not always be inspirational or fun stuff, there may be rough patches that will be far from soothing bedtime reading. I am not a physician or psychologist, nor am I qualified to give you medical advice. I am an interested layperson reporter − but more than that I am a patient spouse and in that sense I walk in your shoes. As for my educational background, you can read about it on our website: Chaya’s Research Credentials. I have no desire to practice medicine without a license and I certainly do not aspire to be a “cancer guru”. I strongly advice you to seek professional help from your own medical team before you make therapy decisions for yourself. CLL Topics is a labor of love. We are all volunteers here. None of us have any links to companies or other organizations connected with the health care industry; neither I nor anyone else associated with this effort makes a single dime from it.
A few words about the art work used in this journal are in order. The changing banners at the top of the journal are cropped versions of photographs. Many of these were taken while Harvey and his faithful dog “EGCG” hiked the hundreds of miles of trails around their home in Sedona, Arizona. Eventually, we plan to have a page of thumbnails from which you can display high resolution versions of the photographs if you wish. Of course the material is only for your own personal use since it is subject to copyright.
If you are an existing member of our CLL Topics community, you know what we are all about. If you are a new visitor, we welcome you and hope you find this journal and the parent website www.clltopics.net to your liking. If this journal succeeds in helping even a few transplant patients in their own journey down this complicated and scary road, I will be content. As always, your thoughtful feedback is both welcome and deeply appreciated.
Be well,
Chaya
40 comments on "An Introduction to this Journal"
Follow-up comment rss or Leave a TrackbackBest of luck. It will be nearly Spring in MN in 2 weeks. Best of luck! You’ll do fine.
Barb and I shall be following this tale with not only interest but best wishes and prayers for both “Harvey and Selena”. You have given all of us so much, I only wish we could give you more.
Harvey and Selena you are in my thoughts and prayers.
With special Thoughts of You.
Blessings,
Rita
Can’t wait to hear of your success……You both have a LOT of prayers going with you.
Luck and Love
Darlene
To the most generous people we know, thank you for sharing so much. We will keep you in our prayers and hope a “monkey off the back” celebration will be in the making soon!!!
Forever Grateful,
John and Cindy D’Angelo
Hi guys and many blessings as you start this adventure. All our thoughts and prayers are with you that this will prove to be curative and you can have victory over the dragon. We will keep up with your post and cheer you on.
Blessings, Jim
We are so fortunate you both are on this journey with us. And we are with each of you. Fly high + through the flames to the other side of this immune disease -whole and healthy. My mini-allo matched-sib follows at MDACC in March/April. Get ready for your new birthday. Barbara
Best of luck in Mn.my prayers are with you both. Dave
We are so grateful that you have been so streadfast on our journey. We happily travel with you now with prayer and tremendous hope.
Best of luck to you both, Harvey will soon be greeting summer in Minnesota
with his dragon well and truly slain.
I wish you both the very best for the future.
Robert
My thoughts and prayers are with you. May you journey be successful and an inspiration to the rest of us.
PC and Chaya,
You have been such an inspiration and great source of information!! I wouldn’t have made it through those first few months of Kenny’s CLL diagnosis without you. Know that you are both in my prayers and thoughts as you walk down this new path. May you be safe and well….
Tami
PC and Chaya —
Thank you for continuing to share your knowledge and experience. I certainly wish you all the best. Knowledge is power, and I’m confident you are making the best choices possible given the state of technology today. I’ll also be following your story closely with a keen eye toward the fact that I may be making the same journey in a few years time. Thanks for blazing the trail!
Paul
I live in Sedona. May your journey be long and uplifting. Hopefully, the energy and beauty of the Red Rocks will be helpful in your journey. Both of you have been the leaders of the pack and hope for the future. Chaya, you bring that undefined hope to so manny of us, as you and PC make your journey. Those behind you will continue to push for more science and research to beat this nasty disease. I appreciate your straight forward reporting for this fight as I am an engineer and just want the facts. Let’s all get together in 30 years and have a sip of something to celebrate victory. Thank you and may God bless you both. One question, will you be sharing the doctors and hospitals you are using with us?
I want you to know you are both in my thoughts and prayers. I wish you more than good luck. I am sorry that you are the one, paving the road for the rest of us. I want to thank you for providing all the information to all of us out here who have CLL. It really helps, because no one else really tells us the whole story; just if you are going to have cancer this is the one to have, is what I am told! Well knowing the facts and knowing others who are fighting this battle has really helped me. I agree with what eagle said above, let’s all get together; but it does not have to be 30 years and celebrate victory soon. But I can tell you that now in my life, I’m trying to raise money to help fight this battle and help any one I know diagnosed because no one knows till you walk the path what this diagnosis is all about. Know you are both in my prayers.
PC and Chaya,
There are no words that can express our gratitude and hope for you and your family. Please know that we all go in spirit with you, just as you have guided us on this journey of our own.
God Speed.
Lisa and Dan Jahnke
Luck be a lady for you! You have done all of us a great service.
Although CLL is scary, having knowledge helps. You have given knowledge that helps eliminate fear. From your information, I can see a light at the end of the tunnel, however dim, that will surely get brighter over time. May God bless you and yours for what you are doing.
Dear Chaya,
I want to wish you and your husband the very best results in your new adventure. We as CLL patients, really appreciate your dedication in keeping us informed. I want to wish your husband the very best of luck with the upcoming transplant.
By the way, you and I have something in common. In my business,we deal with all of the petroleum companies such as Exxonmobil, etc. We sell portable measuring and sampling equipment to the refineries and tank farms.
Take care,
Ron Isaacson
Our love and good wishes go with you. And if our intuition is a guide, Harvey’s going to do just fine. CLL will not outwit Harvey and Serena.
Best wishes, our thoughts and prayers are with you. Your story has been a great inspiration and we can only hope this turns out positive so we can win another battle.
Chaya and PC,
We will be following your progress in Minnesota with special interest –Our prayers and good wishes are with you both! Thank you so much for all you do to keep us informed so we might also make educated decisions!!
Sincerely,
Nancy Beem and Coy Thomas
Best of luck to both of you, “Harvey” and “Serena”! We’ll be rooting for you every step of the way. We’re looking forward to that day of celebration when Harvey shows no trace of CLL.
Dearest Chaya & PJ,
You will both be in our prayers & thoughts. God will be looking out for you
both as he knows you have selflessly helped thousands of people like a mama
hen and papa rooster, guiding and giving hope to others. You were both
chosen to be teachers in this lifetime and your intellect and leadership has
taught your students well.
I believe in the power of projection. You can receive what you truly hope
for; just see it in your mind’s eye…it will come true. We hope your
journey will be as comfortable as possible. We will look forward to hearing
about your “trip”. You are pioneers. Be brave.
Love and Light,
Patt & Jim Egiziano
Chaya & PC,
Best wishes to you as you begin this new part of your CLL journey. I hope and pray for a complete remission for PC. Many thanks to you for all the work you do to educate and inform. CLL Topics is the best educational resource available to those with CLL and their families.
Heartfelt thanks to all the kind people who sent us with their good wishes, either as comments here or as personal emails to me and PC. We are comforted and cheered to know we have so many friends rooting for us. It is a tremendous shot in the arm for us.
We are a worldwide patient community, and yet we are no further away from each other than a couple of clicks of the mouse. Patients need not feel isolated anymore. Without online advocacy organizations such as this one we are diminished to solitary anecdotal stories no one hears. With the strength of thousands of committed grassroots supporters behind us, our voices are heard loud and clear.
Stay tuned folks. We have a long journey ahead but none of us need to travel it alone.
PC and Chaya,
Thank you for sharing your journal with us. We wish you the very best. You are in our thoughts and prayers.
I’ll follow Harvey’s story with intense interest even though I’m too old for a transplant myself. Not just because I’ve been with you virtually from the start but because I like happy endings. And I know Harvey won’t disappoint us. Go Harvey!
Dear Chaya and PC,
It has been a long seven years, we will be following your journey closely and will be sending our love and good wishes as you defeat this dragon once and for all. The very best to you both as you go ahead.
Love,
Beth and Mark
Chaya,
Another trail that you and PC are blazing. Many patient’s want to know what questions to ask about a transplant. This is an area where silence has not been golden. All my best to you as PC starts this journey. Thank you for sharing with the rest of us. You are our teacher.
Love,
Jenny Lou Park
Dear Chaya & PC:
Blair and I echo the gratitude expressed by the strong cummunity you have built. We believe that what you put out into the universe, you receive back. With that philosophy in mind, we have nothing but faith that Harvey will triumph and blaze a path of light for us all. Our thoughts and prayers are with you…as are we in spirit. We’ll see you both on the other side of your adventure.
Love
Barb & Blair
i am gonna show this to my friend, dude
thanks much, guy
High Fives’…Three Pointer and All Net wishes for coming up with the winning combination. Your research talents are unbeatable.
YOU ARE THE GREATEST OF ALLLL TIME!!!
Thank you for all your time, consideration, and thoughtfulness in sharing this journey with “us”. Your work and candor have enlightened so many of us taking the same journey. Knowing that you are there, a mouse click away has given Ted and myself the only sense on calm as we attempted to make sense of what was happening to Ted. We pray for Harvey’s strength in recovery.
All our best,
Ted and Mimi
We just think the two of you are amazing in every way. We are praying for you both. Beth and John
DEAR CHAYA,
JUST READ YOUR UPLIFTING LETTER REGARDING HARVEY’S TREATMENT. I DON’T KNOW IF I AM A CANDIDATE FOR IT SINCE I AM 85 YEARS YOUNG AND HAVE HAD CLL FOR 14 YEARS/. MY FIRST CHEMO TREATMENT WAS IN 2002( FLUDARABINE), THEN IN 2005, I HAD FLUDARABINE AND RITUXAN, THEN IN 2007, I HAD CYTOXIN,FLUDARABINE AND RETUXAN. CURRENTLY, I’M HAVING TROUBLE WITH ANEMIA. MY BODY WAS MAKING ANTI-BODIES THAT WERE DESTROYING MY RED BLOOD CELLS. I WAS PUT ON PREDNISONE AND CYCLOSPORINE AND THE RESULTS WERE GOOD. I AM STILL ANEMIC BUT MY NUMBERS HAVE IMPROVED. ANY SUGGESTIONS WOULD BE GREATLY APPRECIATED. MAY HARVEY MAKE A COMPLETE RECOVERY AND MAY YOU BOTH SHARE HEALTHY, LONG LIVES TOGETHER. HELEN
Good Luck on your treatment….I wish my husband were a candidate….After 17 years with CLL, we have run out of treatment options…not too many exotic choices being 70 and refractory…..I will watch with interest and keep only good thoughts for both of you. Fran
Holding you both in light and love.
Stay strong!
Frances M.